Wednesday, October 1, 2014

My 76 Days of Summer: A Summary and Update

Summer. I missed it. Completely--after waiting through the longest, coldest winter I can remember. But here is a summary and update to thank you all for praying and helping me through this. I feel so blessed.

May 31 was a beautiful day. I wasn't feeling well, but rested extra so I could take my 6-week newborn on a shopping trip with my 15yo daughter and her best friend, and her friend's mother. We went to one of those lovely outdoorsy malls with all the trendy shops the teeny-bops love. The girls wanted pretty dresses, skirts, and accessories for their long-awaited choir tour of Spain in June.

By the end of the shopping trip, I was lying down on a sofa outside Barnes & Noble, realizing I couldn't drive home. The friend's father took me and the baby home, brought my husband and ALL the kids back up to the mall (left the girls to shop more, much to their delight), and before my husband could get back, I had to have my oldest son take me to the ER.

So it started. They thought I had a bowel blockage, but couldn't find one in the CT Scan. Tests were run. Everything became a blur. I was transferred after a few days to the big hospital in Columbus. Still, doctors were puzzled. This ended up in a risky surgery that opened up my entire abdomen to inspect all my intestines. They found nothing. But during surgery, I went into respiratory distress. The doctors told my husband they had done everything they could, but now all they could do was wait, but they suggested he call the family in to say goodbyes. This was at 2:00 a.m. Many of you got phone calls and texts for prayers--some from my oldest two children, Gabe (20), and Breton (15). Just knowing they had to go through this broke my heart when I found out.

During this time (I can only assume it was then), I faced what seemed to me a choice between this world and the next. I was following along a peaceful, warm, safe, pleasant path, then all of a sudden I realized that to go forward meant to go on to the next world, but to go back meant to return to this one. I know the decision was not mine, because God is Sovereign and Providential, but I remember praying at this point, "God, I promised to run my race and finish my fight. I've got kids to raise for You, that You gave me, and a husband to love that You gave me. Please, let me go back."

Obviously, He let me.

I was in ICU for countless days, on ventilator, then trach, and all other forms of life support. All my nutrition was IV. Over those 76 days, with your hundreds of prayers, and doctors scratching their heads, I weaned of everything and started healing. One of the doctors said he didn't know if I could ever come of the the trach. My husband prayed in a fury that that mountain would be removed. It was.

The final diagnosis was two things. One is called Common Variable Immune Deficiency, a.k.a. CVID, a.k.a. hypogammaglobulinemia (or something like that), a.k.a. "Bubble Boy Syndrome." (similar). This is now being treated with 4-hour immunoglobulin transfusions every four weeks that give me a borrowed immune system. And, I really have to learn how to live more germ-free. As in never eat something without washing your hands first--especially if you've been out shopping, etc. We also are going to have a quarantine room for me if the family is sick, or for the person who is sick. But... it was SOOOO nice that the hospital stay got my year-long case of pneumonia cleared up (this disorder is why I couldn't shake it!). I still take deep breaths all the time just to enjoy how good it feels!

The second diagnosis is not really a diagnosis. I simply have a stomach and intestines and colon that don't like to work well or all the time. They attribute some of this to some nerve damage I received on my stomach during a splenectomy four years ago. Some of it could be called an "ilias" (don't know how that is spelled), which is a place in the small intestine where things don't move through. All I know is, the muscles just don't always work to push things through, and when things get stuck, there could be trouble. Big trouble--like the trouble I got in (by they time they did surgery, my stomach was so bloated by the blockage I looked like I was pregnant with triplets and even my maternity clothes did not fit). This is all usually controllable by diet and maintenance medications. I just have to learn, a little at a time the things I can eat and how, and manage my symptoms and pay attention. It's still a bit scary, but I've said it a hundred times, "I'll drink nothing but chicken broth the rest of my life if that's what it takes for me to be with my family."

Now I am home. I am overwhelmed a bit. I am discouraged because I am still weak. We are going to be moving cross country soon, and that thought right now makes me want to crawl under a blanket, curl up and hide. But I understand it will take a lot of time to gain my strength, and things will be get better.

But mainly, I want to say thanks. A million times over. For your prayers, your donations (my husband lost his job due to my sickness), meals, the people who came to sit by my side, the ones who went to help Erik at Breton at home, the encouraging cards and messages, and again, the prayers. I felt God's grace every second, and I felt your prayers.

I SAW God's grace in action through Erik. He spent every night with me, barely getting any sleep in a lousy vinyl recliner, constantly checking my monitors, double checking the nurses as they worked, assessing my needs before I even asked, and looking at me with a smile on his face and words of encouragement the entire time. All 76 days. He would stay until about 3 or so in the afternoon, after he heard all the doctor's and test reports, then make the 1.5 hour or so drive home to get a shower, a smidge of rest, eat dinner with the family, and play a game with the boys and tuck them in bed. Then the long drive back to spend the night with me and start the routine all over again. I wouldn't have made it without him by my side, and he wouldn't have made it without your prayers. This I know, because I know Erik!

Now, I continue to move forward in faith. In this midst of all this, of course I did a lot of praying (mostly just crying "help!"). But at one point God surprised me and spoke to my heart and asked me, "If you would ask ME for one thing, what would it be?" I was shocked. I said, "Um, could I get back to you on that one?" After some thought, I asked for two things, but the two things are one. I said, "God, the one thing I ask of You is for faith, and one more thing, that I learn to live every moment pleasing to you." Doesn't that sound like two things? But it's not. Because without faith it is impossible to please God.

So... I'm probably in for it. Because faith only comes through trials for me, it seems.

The fall leaves still confuse me--how could it be time? And, on a more humorous note, my boys are fascinated that I no longer have a belly button. They cut through it then stitched right over it. But they also fixed my umbilical hernia. So nice to have that pain gone! And, I'm losing my hair. But I told God He could have it if He wants it, so no biggie.

I haven't been able to do a lot of reading, but the only book that I ended up with at this time at God's leading was "The Diary of St. Faustina." It sometimes reads like the very core of my heart and soul, even though the circumstances are completely different. Quite a book! But I sure loved learning more about the depths of God's infinite Mercy during this time. And I'm not very far into it, and have found many bits of wisdom to pass on to the kiddos to exhort them to wisdom and holy living.

Thank you all for your prayers. I could still really use them. I am discouraged and depressed and weak, and things feel difficult all around. I feel weepy, and helpless, and useless. It's been rough. But I know God will see us through. Will you keep praying for us? Please?

But this blog post is really just hugs and thanks all around for your prayers that got me through and kept me here. I really felt them, I felt the grace and saw it, and knew I was being prayed for, and I thank you all for everything you did to help our family. God has provided all of our needs through you. Thank you to all who donated through the website or directly to us, too. Every time I watch my husband pay bills, I just start crying tears of thankfulness for the provision.

And in closing.... I guess, how about this? These pics were from about two weeks ago and show that the "littles" certainly were thriving while mom was out of commission! Praise be to God, always and forever, Amen.

Millie Jewel, age 5 months

Aram, Age 9

Oli, Age 5 (pronounced with a long O sound)

Elon, Age 6

This one shows the missing piece, Mikko (pronounced mee-koh), age 3 in two weeks.

Oh, oh, oh. Words cannot express how my heart was breaking and begging Heaven on your behalf. You are truly an amazing witness of love and faith and fortitude. A million hugs and prayers are still comin' your way. xo

So, Sarah, how can I thank you? I will be praying about this, my blog page views jumped from 200 to well over 1,000 when you posted my update. The number of people who prayed for me just blows my mind, and explains how I physically felt them so much of the time. I owe you one and will get you back somehow. In the meantime you are now always in my daily prayers--for you, your family, and your ministry. Thanks a MILLION, ((Hugs)) love, Cam

I also found you via Sarah's blog. I read through your blog - your insights and wisdom - back in may or June when Sarah first sent out a prayer request in your behalf. Just last week I was wondering what had happened. I'm so happy to hear that you came through this. I will continue to keep you in my prayers. Thank you for sharing your experience, your testimony and your faith. Reading this post today has helped my faith grow.

Camilla, so sO SO thrilled and praising God for His mercy and healing for you! I cannot express how much I have ached and prayed for you and your family...and how much your fortitude has inspired me. Having gone through, and still going through, many trials, I think back to your cross...and it helps me to take up mine and carry it further. It is so good to "see" and "hear" from you again on the blog. I missed you!http://sacredheartfarm.blogspot.com/

OH! PS...In reading about kidney disease and researching because of my son, I have come across TONS of information about immune disorders and gluten. Have you gone gluten free? There are so many studies that say immune disorders and gluten intolerances go hand in hand...

Dear Camilla, I am visiting from Sarah's blog. I am so sorry your health has taken such a scare, but how wonderful God is to have given you a second chance! I am going to pray for you and your beautiful family! Your baby is scrumptious! Please could you remember me in your prayers. My situation is currently very grim, my husband of 21 years left 8 months ago. We have four children, 14, 10 7 and 3 (with Down Syndrome). Don't forget us! The prayers of those who are sick are so precious and I am being a bit greedy to ask for yours, Blessings on you all xx

Rachel, thank you for visiting and offering your prayers for me. I can tell you know how much they mean to me. And thank you for sharing with me. I'm glad to know how to more specifically pray for you and will gladly put you on my regular prayer list--so grateful I have been for the prayers of my "blog family!" I am so anxious to return the favor in any ways I possibly can. May God bless you, too. --Camilla